The life and goings-on of myself Lauren and Paul and all the children we share Bella, Logan, R and bump. We are an autism family and proud.

Monday, 20 February 2017

A letter about "mild autism"

Dear people who know my son,

Sometime for families like mine disabled is the norm. With Bella her difficulties are clear, it's obvious to everyone around that she has some very severe needs. Logan on the other hand for the most part appears very "neuro" typical, other than the fact he is head and shoulders taller than his peers. He is doing well and loving reception and educationally and socially is coming on leaps and bounds.

He is doing well.

Then we go somewhere new, somewhere I forgot to prep him for...we were taking his sister to a music group and he was going as a sibling...he froze outside the door while Bella breezed in immediately stealing the group leaders flute.

I forgot to prep him.

As he stood there quivering, shaking his head it dawns on me that I sometimes forget he is autistic. For him anxiety is a major issue, the biggest issue really. He eventually crept in, coat zipped up to his nose and hood up. I could tell he was willing people not to look at him, he looked pained. I wanted to just leave with him right that moment and bring back my chatty, smiley boy but Bella was already in and causing chaos. To take her out at the beginning while she was brimming with excitement and exploration would have caused a meltdown. It also meant I had to choose between my children's comfort, prevention for Bella or cure for Logan.

When people say a person is "slightly autistic" or high functioning it probably means they don't see these moments. They probably never see the internal and often external battles that children and adults face when seemingly minor things break them out of their comfort zones. Anxiety isn't something that you can really understand if you don't feel it, it isn't something you "just get over" and it's not the same as being shy. As an adult I understand now that I have a lot of anxiety in many areas and I always have had but I understand that, I'm not a child on the autism spectrum.I have two children with one diagnosis it just affects them completely differently.

Please try and not forget that he is on the spectrum even if you don't often see it, or understand why his has the label...that's not really up to you to judge. I admit that I often have to check myself, don't just change plans and expect him to cope, introduce him to someone new and think he will cope or even expect him to cope with his own school friends out of school.

14 comments:

It must have been tough to know what to do in that situation. I don't know much about autism but my sister suffers from anxiety and goes through periods where she just needs to shut herself off for a bit. #KCACOLS

I'm sometimes so worried about how one will cope with something I forget to prep for easy things like telling the other we will be staying for lunch for it will be busy. They both try their best to be all the time - they are awesome. Thanks so much for sharing this with #kcacols and hope to see you there again this week.

Anxiety can really jump out of nowhere and bite you, especially when you have been lulled into a comfortable place where anxiety has not been around fora while. Like you we often get a remind of our son's autism when we forget about the anxiety and the situations that can make him stressful. On days like this we just baton down the hatches, use every calming technique we know and wait for it to pass. #kcacols

OH man! I totally hear you on this one! My oldest son is a high functioning autisitc kiddo and it's really frustrating sometimes because their challenges are so well covered or missed by other people. He really struggles with people thinking he's rude or bossy because of his tone. Or they don't like his drama because if he gets thrown off he can get really unlogically argumentative but it's usually anxiety driven. They are such sweet and wonderful kids it's hard when the world can't see them that way. #KCACOLS

Sounds like it's hard to figure out what to do for the best. I understand the anxiety though. Maybe a little reminder card somewhere saying 'have I prepped both my kids for this?' - I used to have stuff like that all over the house to remind me to do stuff. #kcacols

It must have been so tough to know what to do in that situation. To be honest I really don't much about Autism but I do have a friend who's little boy is and I see the struggles she goes through daily. #KCACOLS

I have stumbled across your blog tonight... you could have just spoken about my daughter... except she doesn't have a diagnosis. I think they are were wrong in the lack of diagnosis. Thanks for reminding me our kids are awesome just the way they are!